It’s official. I have Asperger’s.
It was pretty anticlimactic in the end… a letter in the post summarising the doctor’s observations and concluding with the words “I feel that a diagnosis of an Autism Spectrum Disorder, on the milder end of the spectrum, is justified”. This landed on the doormat back in June. It’s taken me quite some time to sit down and share this with you, partly because it can take me a while to process new information, work out how I feel about it and put my thoughts into anything like adequate words.
So, this is how I feel about my Asperger’s diagnosis…
Must try harder: why my school reports count in my AS diagnosis
I am currently in limbo. Yes, I’m still (still!) waiting to be told whether or not the medical establishment, as personified by my local mental health team, recognises that I have Asperger’s. I’m in what I’m choosing to call ‘Stage Four’ (Stage 1: getting past the GP; Stage 2: initial psych assessment; Stage 3: facepalm-inducing interview). Stage 4 involves waiting, then waiting some more, for the psychologist to phone your parents. Oh, and I had to bring in my school reports. Yes, you read that right: to be assessed for Asperger’s as a 37-year-old woman, you have to give them your school reports from age 3 to 17, and then they call your mother.
I’m being facetious here, obviously (of course I understand why they want to know about my childhood), but it does feel slightly ridiculous. Though I did enjoy the moment when I told my wife about the school reports and she said, hilariously, “Was the fact that you still have all your school reports, and know where they are, part of the assessment?” (she may be on to something there).
Why I didn’t let getting kicked out of uni ruin my life
Or, Might a childhood diagnosis of Asperger’s have been self-limiting?
Two conversations I had last weekend have made me wonder how my life might have been different had I been diagnosed with Asperger’s as a child. A good friend told me how much respect she had for the things I’ve achieved in my life, despite the challenges AS (Asperger’s Syndrome) brings; and my parents wanted to know how a diagnosis might help someone – child or adult – with AS.
Of course, it’s a moot point for me. According to my research, Asperger’s wasn’t a diagnosable condition until 1992, when I was already into my teens, and from what I’ve read it seems that the rate of female diagnoses lagged far behind that of boys (and still does; whether that’s because it’s more prevalent among boys, or less detectable in girls – who present differently – is still being researched). But, had the condition been identified sooner, and had someone recognised my traits, how might a diagnosis have impacted on my life?
Why my initial psych assessment feels like a bad job interview
Last week I had my initial assessment with the psych team at the clinic. Quite a few people have asked me how it went, and I meant to post this much sooner, but it’s taken me a while to process my thoughts and feelings about it. And I can’t tell you yet whether I’m going to get a diagnosis, because this was just round two (round one: getting past my GP). I am now playing a waiting game to see whether I get to play in round three.
So what’s it like being assessed by a mental health team? A bit like being in one of my psychotherapy sessions, but with two counsellors instead of one. And they’re both complete strangers to me. Oh, and this time, it’s, like, a test…
Why you really shouldn’t throw me the ball
I’ve been thinking about what I can tell you about Asperger’s. Quite a few of you have said you really don’t know all that much about it (thank you for saying so, and for being curious!). Asperger’s is a neurodevelopmental condition, which the National Autistic Society describes as “a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people”. It can be tricky (and long!) to explain exactly what this means, because Asperger’s is a spectrum disorder that can affect people differently (it’s been said that if you’ve met one person with Asperger’s, you’ve met… one person with Asperger’s).
According to all the reading I’ve done, it’s increasingly being recognised that the condition presents differently in females than in males, too (which probably partly explains why it took me so long to work out that I had it). So I’m going to start by telling you the bit I really know about: what Asperger’s means for me.
Why I want to stick a label on it
I am overwhelmed by the response to my first post here. Your words have been encouraging, supportive, intelligent, full of praise (which I feel I don’t half deserve) and candour. Some of you have told me that you don’t know much about Asperger’s, but would like to learn (thank you for your open minded honesty). Some of you have said that you would never have guessed, and that my disclosure will not change the way you see me (I can’t help but think that it must, on some level). Lots of you have said my words are inspiring. All of you have called me brave (although when someone is strongly compelled to do something, as I was to share this blog, I’m not sure that brave is the right word exactly. But thanks).
And there have been some who have challenged my decision to pursue a diagnosis. (I am still the same person; I’m a lovely person with lots of great qualities; we all have our differences, our quirks and eccentricities; what’s the use of labelling myself? It won’t change anything at this stage. And if I fail to get a diagnosis won’t I just feel even worse?)
So, why do I want a formal diagnosis?
My dirty little secret (okay, not really, but I got your attention…!)
I have a secret.
A few people (a very few) already know. If you’re reading this post you are now one of them. (And if this comes totally out of left field, please don’t be too hard on me for not telling you. As I write these words only a handful of people in my life already know this about me. And I didn’t necessarily choose them based on closeness of relationship.)
Just so you know, this is pretty terrifying for me. I’m not very good at sharing. It took me until I was 32 to come out to my parents; here’s hoping that this will be just as anti-climactic.
So, this is it: I have Asperger’s. This may come as a great surprise to you, or it may be one of those “Oh, so that’s why… [insert weird/ill-mannered/inexplicable thing I once did/said here]” moments.